Hello i’m Sarah 56 years. I’ve had parkinson’s since 2016 and until last year I was coping really well with medication doing it job. I was diagnosed with stage 3 breast cancer last year and have gone through 8 months of chemotherapy and I’m in a good place with it at the moment. However the parkinsons has become progressively worse with the wearing off and kicking in of medication giving me on a good day i have an hour to 1hr1/2 of decent normal walking on a bad day no normal walking at all. I have developed a painful and annoying dystonia tremor cramping which has damaged my right knee muscles
I have recently been put on Mapodar long lasting taken at night which is making things gradually better but I’m having awful sickness after taking my late afternoon meditation starting with a really dry mouth then fuzzy light headed and then sickness.
I’ve joined this forum to talk to others asking advice experience anything that can help as my quality of life is becoming unbearable and depressing.
Any advice or help i would be grateful for I’m running out of options
Thank you sorry to be so depressing on my first post
Sarah
Hi and welcome to our friendly forum @Sarah56. There’s never any need to apologise here. Everyone is free to say whatever they need to without judgement, so please don’t stop. We have a very supportive group of people here and I hope they’ll be along soon to chat.
You’ve been through such a lot and it’s totally understandable that you may feel depressed. I’d be quite surprised if you weren’t. You may be experiencing side effects from Madopar and the best way to deal with this is to talk to your Parkinson’s nurse or specialist about adjusting your medication. Others here will be able to tell you what they’ve experienced and what kind of advice they were given.
We have information about medication side effects here. Also if you do a search on this forum for ‘Madopar’, you’ll see there have been other discussions that may help.
If you need advice or support, our helpline is here to listen. You can reach them on 0808 800 0303. I do hope you can find some relief soon, Sarah.
Best wishes,
Janice
Forum Moderation Team
Hello Sarah56
I have just caught up with your post and would echo what JaniceP has written, there’s absolutely no need to apologise you were just speaking honestly, that’s all. I’m not really in a position to offer much in the way of advice other than what JaniceP has suggested in her reply. I am not on Mapador and have no idea how your cancer treatments may have affected your Parkinson’s medication, but it does seem logical to suggest this may need review to make sure it’s as effective as it can be and that you understand what the drug is designed to achieve, the best way to take it and to ensure they know about the sickness and so on you wrote about in your post. Maybe a short course of anti nausea tablets would get you over your current sickness and headaches.
I’m sorry I can’t offer anything more constructive or offer the benefit of my experience but I want you to know that we here on the forum will do what we can to support you during this difficult period. We can listen, virtually hold your hand or give you a hug, share your anger and frustration cry or maybe even laugh with you. Whatever you need we are here for you if you need for as long as you need.
You’ve been through a lot and coming out the other side is no picnic that is easy to see, but living with Parkinson’s brings quite unique curved balls whenever it feels like it. You will be well used to batting most of them into the sidelines and nor letting it score an easy goal. You can do the same with all that is happening at the moment. It may be tough, it may be you can’t see how you will ever feel normal again but you’ve survived a very difficult period, and I believe you can survive this.
Take care, find out what can be done about your sickness and if your meds are right and let us know how you’re getting on.
Sending a big hug.
Tot